February 13, 2009I wanted to revisit a study that came out 2 years ago (in case any of you missed it). I remembered I had been looking for quite awhile for a study that would validate what we know in hospice–that if you come into hospice sooner, you have a good chance of living longer.

There was not one. The closest I came to was an article written by a doctor stating another doctor did a study that came to this conclusion, but I couldn’t find the study (there were no references in the article). I needed more than that.

Then, the following article came on the scene in March 2007: “Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window”

I almost fell out of my chair and as I was trying to open this on the internet (I was so excited, my fingers kept missing the keys), I was guessing who with what disease process would most likely live longer on hospice than if they didn’t come on to service. I knew one of them would be end-stage heart disease. Many people with end-stage heart conditions have very poor quality of life that can get significantly better with palliative care.

According to the study:

* the mean survival period was significantly longer for hospice patients vs. non-hospice patients.*Survival was significantly longer with people with congestive heart failure (CHF), lung and pancreatic cancers.*Survival was marginally significant for people with colon cancer*survival was not significantly different for people with breast cancer and prostrate cancer.

My non-expert humble opinion on this is that people are poorly managed in the pre-hospice setting with CHF, lung and pancreatic cancer and so when they enter service, they are the ones who are most likely to receive the most benefit.

Records were reviewed from Medicare claims from people over a 3 year period. During this time many people are in what we call ‘end-stage’ disease in whatever body system that is. End-stage disease does not mean terminal, it just means our body will not function optimally ever again and the purpose of medical treatment is to try and bring us to a higher functioning place and to manage our symptoms.

What research is showing is that hospice symptom management can be applied to non-hospice clinical settings anytime and especially when a person is in this end-stage disease process. A person can be in an end-stage condition for years and not be classified terminal. During this time, people are often living a very limited life in the process.

When someone is struggling with pain, to breathe, to manage anxiety, etc., they are being drained of the precious energy they need to live a good life in the day they are in and to possibly live longer. Most people want to live longer.

Many medical professionals as well as most of the wider community erroneously believe that the medications used by hospice to control symptoms hasten death. They don’t. They support a person’s body to be as strong as it can be at this time of life. Excellent symptom management is the only way a person has a chance of living longer because all their energy is not being used struggling to cope. I call this ‘supercoping.’ We get so used to severe symptoms that we think this is the new normal that we must deal with much of the time. It is not.

I have taken care of many people who struggled from 15 minutes to over 3 hours in trying to get a severe shortness of breath episode under control. If a person is given the proper medications to keep their breathing pattern comfortable to begin with, then it becomes easy to see when a ‘breakthrough’ shortness of breath episode is coming. As we see it begin to develop, medications are given at that time to keep the episode manageable.

Have you ever been with a person who is having a severe shortness of breath episode? Have you seen the terror in their eyes and their agonizing efforts at trying to get control over it? Did you feel despair and panic as you tried to help them get through this? yet again? Over an extended period of time (30 minutes +)? This is unacceptable. It doesn’t have to be like this.

When symptoms are under control, we can eat more, thus strengthening our body. We can sleep better because we are not physically miserable. When we eat and sleep better, we have more energy. When we have more energy, we can visit longer with loved ones. The effects of the medications are maximized. The synergy of all this is incredible. When we are comfortable, we have more hope. With hope studies show we live longer. When we are physically comfortable and have hope of staying that way, we are able to maintain relations, enjoy our spiritual practice, and take the trip we’ve been wanting if possible. None of that is possible when symptoms are not well controlled.

When symptoms are not controlled, we are laying in bed more, do not feel like talking or visiting, are more prone to depression and isolation. The family is distressed experiencing the hopelessness of the situation. When symptoms are well managed, if we are going to live longer we will. Whether we are going to live longer or not, with appropriate medical management we will be in maximum comfort.

If you are terminally ill and want to live longer, your best chances of doing so is getting on hospice services. Isn’t that something?

This reminds Me of a PBS series several years ago. I believe it was Bill Moyers investigating Dying with Dignity (I could be wrong about the title and reporter). One part of the series was about a program helping the poor and indigent with drugs and health care in neighborhood clinics. In order to get help the patients had to have a doctors evaluation saying death was expected in 6 months or less. However with health care and medicines the People were living past the 6 month mark. What did they do? The programs kicked People off.......No Med's...No Healthcare! As the patients became sicker and prognosis was death in 6 months or less they were reinstated in programs! Questioning the disqualifications the reporter was shown actual paper work signed and listing reason for removal from care ....."Failure to Die!"

...Yes they showed actual paper work listing as cause for program disqualification.... failure to die. This was probably run 9 or 10 years or so ago. I guess the impact wasn't lasting or viewing audience was small, I remember it was slotted against Regis saving the network hosting Who wants to be a millionaire! This is a TARNISHED example of taking Medical care options away from Doctors and putting those options in the hands of bean counters!

I know I'll catch some flack from this ......but......One wonders where are the Pro-Life People on this? No I'm not talking apples and oranges here, it doesn't matter which end of the spectrum We're talking about Life is Life!

Please take a couple deep breaths and count to 10 before You let me have it! Take care, best of luck and hang in there.